All about Xeloda
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JFL,
Having a full time job and a baby are enough to make anyone fatigued. I'm amazed you can do both those things with Stage IV cancer! I get sleepy a lot too but I take naps during the day when I can. I know some people swear by Ritalin as a way to stay awake and alert. I would say that, in your case, you may just need to get more sleep. Any way you can cut back on your work hours? I went on long-term disability right after I was diagnosed with mets and my kids are 18 and 22. Your body needs rest in order to heal.
Hugs, Susan
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Hooray, Babs! Congratulations on your great news!
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Susan and left foot thanks so much! I'm only hoping that I can stay on Xeloda because the SE's are no walk in the park!!!!!
Babs
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Hello,
I hope you don't mind me posting a question; it's hard to find other places talking about Xeloda. First of all, I've read through a lot of this thread, and I'm amazed by everyone and sending lots of love and wishes to everyone.
I have Triple Negative Breast Cancer, and had neoadjuvant chemo before my surgery, and there was significant residual cancer at time of surgery along with lymphovascular invasion, so my odds of metastatic recurrence are extremely high (>50%). Prior to December, there was no adjuvant chemo advised in these situations because none had been proven to help reduce risk. A new study came out in 12/15 from Japan, showing that Xeloda helps reduce risk in these cases, especially for TNBC, so I started Xeloda after finishing my radiation treatment. Some oncologists are onboard with this; others think there need to be more conclusive studies to confirm these results before prescribing X in these circumstances. I just finished my 3rd round. I take 3750 mg total per day (half in am, half in pm)...I think this is 2250 mg per meter squared for me, just below the recommended 2500. Rounds 1 and 2 were a breeze--almost zero side effects. Round 3 saw the onset of hand/foot syndrome, and I also have head pains (they started a little earlier, but are not debilitating). The study had women taking 8 rounds (two weeks on, one week off), so that is our current plan.
I'm wondering what to expect in terms of increase in HFS. I'd say that it hurts right now, but is not intolerable. I have some weird patches of dry skin despite goobing my feet up constantly with all of the lotions I see you ladies using, and some bumps on the bottom of my feet that look like pre-blisters, hard to describe. My feet sort of feel like they are on (low-grade) fire. I admit that I was kind of happy to have HFS kick in a little bit, because I had read the studies that showed that X was more effective in the patients who experienced HFS (although of course it can work great for people who don't experience this, too, but since the studies implied there's somewhat of a correlation, it is something that I oddly wished for. Feels weird to hope to suffer).
More importantly, I started to have head pains not long after starting X. While I see "headaches" listed as a possible side effect, it is near the bottom of the list, seems rare, and I don't see a lot of people complaining about this. Of course, I'm thinking it's brain mets, but hoping it's a side effect of the Xeloda. My grandmother had TNBC and brain mets. The pains I feel (for about 5 or 6 weeks now) are not like a typical headache. More like short electrical zaps. They are usually brief (5-30 seconds) and not super-painful (maybe a 3 or 4 on a 1-10 pain scale). Sometime it feels like something is pressing on my brain. My oncologist isn't eager to offer a scan right now, so I am left wondering if it is a side effect or brain mets. Trying not to think too much about it, but since these zaps are quite frequent, that's a little impossible. Anyway, I just wonder if this sounds like brain mets to you, or if anyone has had this kind of head feeling from the Xeloda?
I apologize for intruding here, but it seems like this board has all of the Xeloda experts! I am wishing you all well.
Thanks,
Tulips
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Too many posts to catch up on, so I'm just gonna jump in here!
BABS, GREAT NEWS! I too will do a Happy Dance for you.
TandD, I find the effects to cumulative. I've been on for a little over a year. HFS is not fun. My feet can get so sore and red. I've not had any blisters, just peeling and redness. Hands are dry, peeling, cracks and splits at the tops of fingers. As for your headache, you should talk to your doctor about that. I don't have any brain mets, so not sure how it may feel. Hoping its a SE of X, it's not one that I have, and hope not to. Good luck!
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Forgot to add....Vegas was good. Had a good show for two days and the Donnie and Marie concert was awesome! I thought it might be cheesy, but not at all. I would see it again. Marie made many costume changes and wore all 6" heels! Boy can the two of them dance, especially Donnie.
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Goldie. Glad you enjoyed the show. They're both supposed to be amazing performers! I can't imagine wearing heels at this point. Only can wear sketchers!!!!! So fashion is out the window now!
Tulips. The HFs is definitely cumulative. I've been on X since 1/1/16. My toes alternate getting sore and red. I think it's from the peeling and then they get infected. This isn't easy but so worth it since my mets are decreasing in size I am not getting headaches. I would call my MO to discuss if I wer
Babs
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TulipsAndDaffodils,
There is a thread for Brain mets, in which several patients were capecitabine before: https://community.breastcancer.org/forum/8/topics/... I would try asking the question in that forum. My wife's specific case was that while she was taking X, she had many bone mets (more than a dozen) and two lung mets, and her dosage was four 500-mg pills a day. This corresponded to 600 mg/sq.m. (i.e. only 60% of the 1000 mg level suggested by recent studies). When new mets started developing, the oncologist increased her dosage to 6 pills, which corresponds to 900 mg/sq.m. That seemed to stop the growth of new mets, and even shrank the lung mets.
However after 8 weeks of the increased X dosage, HFS compounded with her athlete's foot and caused such a devastation in her feet that she had to stop. After a 6-week interruption she had a brain seizure, and multiple mets were found in her brain. I don't know if it was a coincidence with the interruption of X, or if the brain mets had been there for a while, and another restrain was eliminated for them, but I just offer our anecdote as a data point for you. All the best to you.
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delighted to hear your good news, Babs! I hope you can hear me cheering loudly from Scotland
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hi every one, I feel like I'm a new member at an AA meeting or a BC.org meeting... Any way I am starting Xeloda tomorrow after failing Afinitor. My dr says they see less HFS w/7 days on 7 days off. I am encouraged w/what I have read. The side affects from Afinitor were awful besides getting Shingles, I had resp problems & mouth sores
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Love to sing-yes I hear your cheers. Where in Scotland do you live? My sister lived in Ayre for 2 years and my niece was born there! Loved it when we went to visit.
Susan-good luck with X. I hope you have minimal SE's because for me, X is the first treatment to work! So I wish you much success!
Babs
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tulip
When I was first treated for TNBC, I had neoadjuvant AC+Taxol. Didn't work great, but surgery got it "all out". Had 1/11 lymph nodes positive, so did radiation. Local recurrence in chest wall during radiation, then had a one migraine after. Told doc, got brain MRI and found a 2cm brain tumor. TNBC is aggressive. You need to speak with your doc I had the tumor removed, did while brain radiation and went 4 years with no changes to my brain. Then, poof, routine scan in 2015 revealed like 30 tumors in my brain (no symptoms!). Better to get the scan done in my opinion. Good luck!!
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just wondering on a couple of things:
Hand/foot: do you put the cream on and then socks at night, or let your feet breathe???
Dry mouth: any suggestions? Hard to brush teeth right now. I use biotin toothpaste and mouth rinse and have increased my water intake to the point I pee on myself
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Both. I put thin socks on until it all absorbs. Then later my feet always get too hot and I slip them off. Sometimes in my sleep!
Sorry about your mouth! I don't know what to tell you about that. Maybe try coconut water, which is said to be more hydrating than H2O. I have to use a tongue scraper every morning when I'm on the meds because thick, yucky stuff builds up overnight. It's one of the body's way of detoxing, so it's a good thing, but now that I have seen the grunk that comes off my tongue every morning, it's become A THING for me, sort of psychologically. I have to get that stuff off before I can even take a drink of water! It's not as bad on my off-weeks.
Maybe something like this is contributing to your mouth feeling dry?
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- hi Babs! I live in the North of Scotland in Inverness, close to Loch Ness where the monster lives! It is normally colder up there than Ayr where your relatives live but it's very beautiful. You would love it! We are getting some hot weather just now so looking forward to trying out my new Sketcher sandals. Would love to go to America especially New York but I think the travel insurance would be very expensive now for me but I think I will make enquiries while I am still doing well.
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One of my favorite trips was very far north of you, in the town of Dunnet. My cousin was married on his parent's farm at the northernmost tip of mainland Scotland. Their wedding was over the bank holiday at the end of May and it was COLD!!!! We spent a week, exploring the area. Quite beautiful. My mother just returned from there. She spent Easter week at the farm.
Been a pretty rough day, as seems to be the custom with day 7. Very unsettled GI system, and painful feet. Too bad I had so much to do today. I am thinking that I should not go to the Red Sox game tonight. Not sure about walking from the T and bathroom lines.
*susan*
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Love to sing. We traveled up your way and saw the Lochness monster!!!! My sister lived there for about 5 years before she came back to NY
I'm on day 4 of this cycle and my hands and feet really hurt!!!! Yikes!!!
Babies
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My family visited Scotland in 2006, for the 700th anniversary commemoration of the coronation of Robert the Bruce as king of Scotland. We even appeared in the BBC coverage of the festivities-- our lone claim to fame, LOL. We absolutely loved Scotland! My husband has donned his kilt annually for the Texas Scottish Festival & Highland Games for almost thirty years. He and my son wore their kilts in our daughter's wedding.
Day 4 here. Starting to feel the wind-down coming on. Have to take a trip for my niece's graduation on days 6-8, and boy howdy am I not looking forward to being away from home for the second cycle in a row... first that baseball tournament, and now this graduation. These kids are keeping me hopping!!
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Thank you so much, everyone, for the really helpful information (both regarding HFS and the headaches). I've been a little reluctant to push for the brain MRI because it's a very busy month and I'm not quite ready to deal with any findings, but if this doesn't stop, I'll get scanned in a couple of weeks. I am hoping for all of the best for each of you!!
Oh, and like Lulubee, I put on socks after the lotion, and then always manage to wake up without the socks on ;-)
Tulips
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I also wear cotton sox at night over very well slab rd feet. Mine stay on! And I wear cotton gloves too! So pretty!
Babs
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Great to hear all your stories of visiting Scotland! Gives us all a wee break from our struggles on Xeloda! I am also a really attractive sight at night with my hands and feet thick with cream and socks and gloves on! I have been fine with leaving my socks on since my dose was reduced a couple of cycles ago. I am on day 6 of my cycle and worked from home today. I had hoped to take a wee walk tonight after work but was just so exhausted, I laid down instead! Some days, I feel so hungry on this drug, I want to eat and eat. If I get hungry, I just feel so faint and ill. I am going to take a break from work at lunchtime tomorrow and have a walk just to get out of the house and try to keep my weight gain at bay
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Hello, I am going to be starting Xeloda in a week and have already read some of the discussions on here. I had 6 rounds of ibrance and scans showed that my tumors grew a resistance so here I am. Praying that this works for a long while.
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Lovestosing,
I have gained 15 pounds while on xeloda. Like you, I am hungry all the time, like I can't get full. So frustrating.
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Reneeswan - although I'm sorry that you, like me, have gained weight on Xeloda, at least I know now it's the drug and not just me being greedy! I wonder whether it's because I'm on the toilet so much that perhaps I'm not getting the best out of all the food I eat? Mind you that doesn't account for the weight gain
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I was taking Ibrance/Femara but my last scan results on Wednesday showed progression. And I have a tumor on my spine that will need radiation. I will be taking Xeloda next and I was hoping to find out what I can expect from it. Thanks so much
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just visited to say bye for now.. Will be moving on to Navelbine & Aramidex soon. Might be back with my date with X who knows?
Hope, you stick with it as long as possible as long as it doable. Mine was a good date, apart from the heartattack he gave me on our first date haha
))Hugs
Ebru
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Puur and telmom
I was on 2 other treatments before X Xeloda is working for me! My TM's and my mets have all decreased. I hope it works for you both. I've been on it since 1/1/16. You can PM any questions you have.
Babs
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has anyone had side effects of muscle weakness and loss of balance? Just wondering if this is from Xeloda or my tumors
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Hello everyone, I am joining the club of Madame X tomorrow... High dose to start off, 4 pills @ 500 mg twice a day, 7 on and 7 off. Wish me luck. Mostly I'm worried about being able to work with the side effects. I'm really lucky in that I can work 100% remotely if needed. But I still need to use my hands for the computer, plus most importantly my brain! I've been putting off going on short/long term disability, but I wonder if this will be the thing that puts me over the edge.
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Ally
I also started with the same dosage as you on 1/1/16. About 1 month ago it was reduced to 3500 and now 3000. I work ft and due to my HFS I now take a car service some times and walk to work on the days I can. I too am on the computer all day long I hope X knocks your mets back as its done for me!
Babs
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